My bloodwork came back negative for all tick-borne pathogens--my duck wont treat me---and as it stands now, the soonest I'll be able to see an LLMD will be july.
Have petechiae on arms--been getting more each day despite doxy. -> BABS! How much brain damage can that do in two months?
I cannot accept that these spots are not from a tick-borne infection-- Please, I need the names/ contact info of Any Minnesota LLMD's of which you know!!!!
Adam
[ 31. May 2007, 02:15 AM: Message edited by: adamm ]
Posted by Kayda (Member # 10565) on :
Sorry about those results. It is extremely difficult to find borrelia in a particular vial of blood. Same with co-infections.
Please delete the dr's name. We are not supposed to post names because it might cause them to get harrassed.
Thanks, Kayda
Posted by Skyler (Member # 11549) on :
I am so sorry to hear that Adam! This Lyme stuff can be real tricky. It took me 12 years of symptoms and suffering before I finally figured out I had lyme. Then It took 4 tests to get a correct answer (which I got only 6 days ago, started treatment 5 days ago).
Its SO hard to have lyme and co infections! Because on top of being sick, you have to worry about your health and try your best to be seen by a doctor! The waiting lists are too long, and no one has time to wait around to get better!
I too am waiting to see a real LLMD. right now I was diagnosed by an infectious disease doctor but she knows nothing about lyme. So I am waiting and doing treatment with her (simply because I am not going to wait around doing nothing about it) just until my appointment with this good LLMD.
How long have you had these symptoms? How has their progression been?!
I can imagine this is a very difficult time for you. I really hope you get the help you need! Hang in there babe! Keep us posted on how you are doing!
Posted by adamm (Member # 11910) on :
I was bitten on the seventh of this month. No symptoms other than petechiae.
[ 31. May 2007, 02:12 AM: Message edited by: adamm ]
Posted by Kendrick (Member # 10990) on :
I hope you get better, and try to stay as calm as you possibly can(I know it's difficult). Go to the 'Seeking a Doctor' section to find a doctor.
Good luck and I hope you get better, whatever's causing you to be sick.
Posted by Lymetoo (Member # 743) on :
**How much brain damage can that do in two months?**
Not much in my opinion. I had it for years and years before receiving treatment. I'm doing fine.
Resolve on its own? Not a chance!
I have some names of drs.
Posted by adamm (Member # 11910) on :
Just one more question: if it were causing me brain damage (sorry, I'm dealing in worst-case scenarios) would I likely experience other symtpoms of illness, or would Ijust gradually lose my mind?
Posted by cactus (Member # 7347) on :
Adam, worst case scenario, you would experience other symptoms first, I believe.
I was also infected more than 20 years prior to being diagnosed and treated. I am getting well slowly.
You'll be getting treatment fairly quickly, and I feel very hopeful for you.
Hang in there. Like you, I thought my LLMD appt would never arrive (and I had to wait 6 mos)...
If you can find a good LLMD who can take you earlier, go for it. Otherwise, maybe you can try to do all your prep work? Prepare questions, research, etc...
Posted by adamm (Member # 11910) on :
Thank you, everyone, for being so supportive. This has been one of the scariest days of my life.
Adam
Posted by sixgoofykids (Member # 11141) on :
I've had it for 35 years and only started treatment in January.
It seems to me that many of the brain symptoms are caused by toxins ... like the bacteria dying off. The more toxic I am ... like during a herx or starting a new medicine ... the more mental symptoms I have.
I did the salt/vitamin C treatment, samento, and noni while I was waiting for my LLMD appt. I at least felt I was doing something ... it did cause me to herx.
The salt/c raised my basal temperatures ... they were always low before, now there normal and they stayed that way. I could even stop taking thyroid.
If you do that, read about it yourself and come ot your own conclusions on whether you think it will be effective.
Posted by lymednva (Member # 9098) on :
I was ill for more than 40 years when I finally began treatment. I didn't experience any major cognitive problems for at least the first 20-25 years, so I don't think two months will do you in.
I know it is frustrating to wait to see a doctor. Most of us have had to do that at least once in our Lyme experience.
Use this time to learn as much as you can and also to work on learning some relaxation techniques to help you let go of some of the anxiety.
I know, easier said than done!
Posted by adamm (Member # 11910) on :
Wait. It's possible that what I have is ehrlichiosis, RMSF, or bart and the the antibiotics, while I'm not taking them in high enough concentrations to beat one of thoe organisms and thus stop the petechiae form appearing, were responsible for the seronegaticity, right?
Posted by lymednva (Member # 9098) on :
You are probably seronegative because it's too soon after the bite for a positive test. I can't speak to the other, but hey, you never know!
Not to be taken as medical advice.
Posted by TerryK (Member # 8552) on :
I assume you had the test run a few weeks after you were bitten? If that's the case, you may not have had antibodies yet. It would not be unusual at all to get a negative result this soon after you were bitten.
As I mentioned before, if a person takes abx immediately after a bite, you may never have a positive test even if you do have lyme disease (and I'm not saying that you do). This is mentioned in my States information about lyme disease so I assume this is a well accepted. I've also read this info in several other places but don't have the links off hand.
Perhaps someone else has more info on that?
I took my test while on 400 mg's mino for several weeks per my LLMD. It was IgeneX positive with significant bands for IgM.
Terry
Posted by bettyg (Member # 6147) on :
adam, i sent you a pm.
Posted by adamm (Member # 11910) on :
Actually, misprinted back there. I won't be able to seen an LLMD until August.
Is 3 months without any brain damage likely (or are cases like Lymetutu's rare?)
Sorry if I'm a pain; this is the last prognosis-related question I'll post, promise!
Adam
Posted by bettyg (Member # 6147) on :
quoting tutu,
"Not much in my opinion. I had it for years and years before receiving treatment. I'm doing fine.
Resolve on its own? Not a chance!"
adam, i've had chronic lyme for 37.5+ years; 34 yrs. MISdiagnosed,
there are MANY here having this for 1-4 DECADES.
we do not know when the neuro lyme happens to brains; each of us is different adam.
start reading now on 57 pages i just sent you ok! learn how to prepare for 1st llmd visit, and much more. good night adam! Posted by dontlikeliver (Member # 4749) on :
Hi Adam,
I don't know whether you have Lyme and other TBD's or not, BUT try to not get hung up on the brain-damage scenario. Many of us here have been sick with what turned out to be Lyme/Babs for many years - about 20 years for me now - and I really don't think braindamage is an issue in any major sense. Lyme is probably more likely to affect a person in that way with some cognitive problems.
I think you should contact the MD you saw who says you definitely don't have Lyme and refuses to treat based on negative tests and ask him to put it in writing that you do not have Lyme due to negative tests, after you've reminded/informed him that you cannot rule it out with a test alone and that it should be a clinical diagnosis based on history + symptoms and the test used to support the clinical diagnosis. Remind him that the test was devised for demographis, not diagnostic purposes.
Posted by Cobweb (Member # 10053) on :
What lab did your bloodwork?
Also,should lyme creepy crawlie into your brain, the effects are reversible with antibiotics that cross the brain barrier. So don't despair.
If you want to be proactive and you weren't tested at Igenex, then get the paperwork from them to do another lyme test prior to your August appointment with LLMD.
We all freak out at one time or another. Your in good company.
Carol
Posted by CaliforniaLyme (Member # 7136) on :
Petechiae can be from MANY MANY diseases not just TBDs!!! And you don't seem brain damaged at all so far!*)!*)! Just very anxious!!!!
I saw a therapist when I was really ill- it helped a lot!!! I highly rec'd it*)!*)!!
You don't sound brain damaged.
The people I know including myself were never brain- damaged anyway- but brain IMPAIRED!!! Everyone locally I know who appeared brain damaged got better with treatment and are no longer presenting that way*)!*)!
So cheer up, even if you do have LYme, and DO get symptoms which seem like brain damage, it is most most most most MOST likely just brain *impairment* of function and very treatable-
Best wishes, Truly, Sarah
Posted by Truthfinder (Member # 8512) on :
Adamm, you may have been tested way too early - well, at least for Lyme. It CAN take up to 6 weeks to form antibodies..... sorry, but you may have to retest or get a 'clinical diagnosis' from an LLMD.....
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